The International Consortium on EDS and Related Disorders

  • The International Consortium includes clinicians, scientists, and patient experts from around the world who share a devotion to the advancement of clinical and basic research about the genetic and physiological bases of Ehlers-Danlos syndromes and hypermobility spectrum disorders as steps to implement effective diagnosis and treatment.

    This network brings members together to work on many challenges and research questions faced by families, clinicians, and social agencies. The clinicians, scientists, and lay experts are organized into committees based on medical specialty and research interests, and coordinated by the Steering Committee.

    The consortium was founded at the first EDS symposium in Ghent in 2012 by our medical and scientific board chair, Professor Fransiska Malfait, and her colleagues. It was expanded and formalized through work that led to the 2016 Ehlers-Danlos Society International Consortium Symposium in New York and subsequent publication in The American Journal of Medical Genetics Supplement in March 2017 of consensus documents on classification and management of people with all types of Ehlers-Danlos syndrome. The Ehlers-Danlos Society facilitates and supports the International Consortium’s work.

    Would you like to be part of our international consortium?